International Nystagmus Awareness Day is lived by family 7 days a week, 365 days a year

Wednesday

Nov 6, 2013 at 8:00 AM

Marsha Miller @mmillerARD

It's "Wobbly Wednesday."

Haven't ever heard of the day?

That's no surprise. This is the first-ever "Wobbly Wednesday" — an International Nystagmus Awareness Day.

While it's no surprise most have never heard of "Wobbly Wednesday," it's also no shock the majority of area residents don't have a clue what nystagmus is, much less how to pronounce it. But Matt and Chasity Lamb, Ardmore, have vowed to change that.

The local couple's son, 1-year-old Karter, has nystagmus (pronounced ni-stag-mas), an eye disorder characterized by a (wobbly) involuntary movement of the eyes that can seriously reduce vision. The couple is traveling the nystagmus road with their son, and they want to share what they've learned — offering support to other families dealing with the same issue and increasing community awareness.

Karter was just three weeks old when his parents noticed "his eyes started shaking." The movement was so erratic and rapid, it sometimes resembled bouncing balls. At the same time, Karter's little head would also wobble as he strained to focus.

"My mom, who is a nurse, said, "Find a specialist right now," Chasity said.

Karter's parents followed his grandmother's advice, obtaining an appointment with Dr. James Richard, an opthamologist at Children's Eyecare in Oklahoma City. By the time he was two months old, Karter had been diagnosed with nystagmus, and his mom and dad were scouring the Internet for every scrap of information they could find about the disorder. One of the primary resources they discovered was the American Nystagmus Network at nystagmus.org.

Some of the things the couple learned immediately was one in an estimated 2,000 people in the U.S. are born with nystagmus, but the numbers are even higher in other countries, such as the United Kingdom. And while Karter has Early Onset Nystagmus, Matt said other health issues, like strokes, can also cause the condition later in life.

A handsome, happy and engaging child, Karter doesn't see the world literally bouncing around him 24/7. But it's frequent. It's hard for him to track moving objects, and he may not see fast-moving objects at all. Sometimes he sees more clearly than at other times.

Chasity describes the world through her son's eyes. "He sees color and fragments of things. For example, we look and see a ball, but he sees only part of the ball clearly. His vision is narrow. It's hard for him to see in busy or cluttered places. We have a patterned rug in the living room and he has a hard time seeing things lying on the rug."

Excitement, fatigue, stress and illness can all exaggerate the symptoms Karter experiences.

And nystagmus does something else, it robs the little boy of energy.

"It takes the same energy as 15 jumping jacks for him just to focus," Chasity explained.

The effort just to see the world around him and the energy it takes leaves Karter little time to develop the skills other children his age have attained. Balance is an issue, and he doesn't sit, stand or walk on his own. His motor skills are lacking. Currently, Karter works with a Sooner Start vision specialist and has physical therapy. His condition has shown some improvement since he was diagnosed, but will he ever see normally? The answer is no.

But Matt, Chasity and Karter's big sister, 8-year-old Kya, don't see the little boy's disability as something to keep secret.

"We see him as a gift from God," Chasity maintained.

While admitting nystagmus means life "is sometimes an emotional rollercoaster" for the family, both Chasity and Matt say it's important to spread the word and to offer support like the kind they have received from other families.